They started a slow drop of the prednisone on me when my transplant failed and then a new doc came in. Went from 10 mg down to 0 in 10 days. It was kinda rough, really rough, the first month because of the joint pain but I am glad I no longer take it.
:shock: :roll: That is just plane WRONG! Joint pain plus hallucinations, and jerking awake!! Didn't you have any of that??
Mallory. One mg a month. So tell your doctor that you want to go down to 7mg for 1 month then 6mg for one month then 5. Don't drop from 7.5 to 5. .......S - L -O - W........
I am so glad I read this. My transplant stopped working in September and I am still on 5mg a day of Prednisone. My doctor has not even started weaning me off of it. She did stop the prograf because my PD catheter wasn't healing well. I am only taking the prednisone and rapamune. I am not in a hurry to get off of it because I still make a lot of urine and I want to avoid the fluid restriction as long as possible,
I spoke with Jenna's transplant coordinator yesterday and she reiterated thattheir transplants are "steroid free" - so I hope this is the best way to go?~Karol
I wish they had that in my transplant hospital... I don't like all the side effects and if they can do it without then GREAT!!
I was told by one of the transplant centers we use that steroid free transplants depend on what the HLA level is of the patient. Those patients that have low levels are eligible for steroid free transplants. However steroids are still given for anywhere from 2-6 weeks depending on the patient.
Quote from: BigSky on November 23, 2006, 05:39:25 PMI was told by one of the transplant centers we use that steroid free transplants depend on what the HLA level is of the patient. Those patients that have low levels are eligible for steroid free transplants. However steroids are still given for anywhere from 2-6 weeks depending on the patient.Yeah, they advertise one thing, but reality is another.
My transplant center does a 4 day protacol with prednisone. The surgeon said mine would be alot longer because of being sensitized patient and needed pheresis. Just depends on the center and the patient.
There was a lady in the dialysis unit yesterday from out of town who loved to talk to everyone. She told me that she had been on Prednisone a LOT in her life and everytime when the dose was finally lowered and she was off her moon-face would go away. But she told me it is different when you are older. She said her face didnt spring back like always and infact her face hung (extra skin) and the doc even thought she was really sick cuz of how she looked. !!
Quote from: angieskidney on November 25, 2006, 10:06:25 PMThere was a lady in the dialysis unit yesterday from out of town who loved to talk to everyone. She told me that she had been on Prednisone a LOT in her life and everytime when the dose was finally lowered and she was off her moon-face would go away. But she told me it is different when you are older. She said her face didnt spring back like always and infact her face hung (extra skin) and the doc even thought she was really sick cuz of how she looked. !! Well, im not old, im young im only 28, and ive had my moon face since i was 17.. but like i said, most of the time i was on prednisone it was very high doses, and i was on IV prednisone (solumedrol) for like 3 months straight plus other times... sucks.
Quote from: angela515 on November 25, 2006, 11:37:17 PMQuote from: angieskidney on November 25, 2006, 10:06:25 PMThere was a lady in the dialysis unit yesterday from out of town who loved to talk to everyone. She told me that she had been on Prednisone a LOT in her life and everytime when the dose was finally lowered and she was off her moon-face would go away. But she told me it is different when you are older. She said her face didnt spring back like always and infact her face hung (extra skin) and the doc even thought she was really sick cuz of how she looked. !! Well, im not old, im young im only 28, and ive had my moon face since i was 17.. but like i said, most of the time i was on prednisone it was very high doses, and i was on IV prednisone (solumedrol) for like 3 months straight plus other times... sucks. You sound like me .. I was on it since I was 16 til I ... oh wait I am still on it